OMERACT systemic lupus erythematosus domain survey.

Core Outcome Set Domain Systemic lupus erythematosus

Journal

Seminars in arthritis and rheumatism
ISSN: 1532-866X
Titre abrégé: Semin Arthritis Rheum
Pays: United States
ID NLM: 1306053

Informations de publication

Date de publication:
24 Jul 2024
Historique:
received: 14 03 2024
revised: 25 06 2024
accepted: 01 07 2024
medline: 7 8 2024
pubmed: 7 8 2024
entrez: 6 8 2024
Statut: aheadofprint

Résumé

Since the development of the OMERACT Systemic Lupus Erythematosus (SLE) Core Outcome Set (COS) in 1998, many new SLE domains have been identified and measures developed, creating a need to update the SLE COS. To revisit the 1998 SLE COS and research agenda domains, and generate new candidate domains, we conducted this study of patients with SLE and collaborators. (1) To evaluate existing candidate SLE domains for inclusion in the SLE COS. (2) To generate additional candidate SLE domains for COS consideration. (3) To engage SLE collaborators, including patients, in developing the updated SLE COS. The OMERACT SLE Working Group's steering committee developed a survey to assess the importance of candidate SLE domains and generate additional domains for consideration towards the SLE COS. Patients with SLE followed at the University of Toronto Lupus Clinic (patient group) and members of the OMERACT SLE Working Group (collaborator group) were invited to complete the survey between August 2022 and February 2023. A total of 175 patients were invited and 100 completed the survey. Of 178 collaborators invited, 145 completed the survey. Patients tended to prioritize life-impact domains while collaborators prioritized clinical domains. Both patients and collaborators recommended additional domains to those included in the 1998 SLE COS and research agenda. The domain inclusion and importance results demonstrate that patients and collaborators prioritize different domains, so capturing the perspectives of both groups is essential to ensure a holistic assessment of SLE. The results of the study identify domains that already have a high level of agreement for potential inclusion in the SLE COS, domains that require further explanation, and novel domains that warrant consideration.

Sections du résumé

BACKGROUND BACKGROUND
Since the development of the OMERACT Systemic Lupus Erythematosus (SLE) Core Outcome Set (COS) in 1998, many new SLE domains have been identified and measures developed, creating a need to update the SLE COS. To revisit the 1998 SLE COS and research agenda domains, and generate new candidate domains, we conducted this study of patients with SLE and collaborators.
OBJECTIVE OBJECTIVE
(1) To evaluate existing candidate SLE domains for inclusion in the SLE COS. (2) To generate additional candidate SLE domains for COS consideration. (3) To engage SLE collaborators, including patients, in developing the updated SLE COS.
METHODS METHODS
The OMERACT SLE Working Group's steering committee developed a survey to assess the importance of candidate SLE domains and generate additional domains for consideration towards the SLE COS. Patients with SLE followed at the University of Toronto Lupus Clinic (patient group) and members of the OMERACT SLE Working Group (collaborator group) were invited to complete the survey between August 2022 and February 2023.
RESULTS RESULTS
A total of 175 patients were invited and 100 completed the survey. Of 178 collaborators invited, 145 completed the survey. Patients tended to prioritize life-impact domains while collaborators prioritized clinical domains. Both patients and collaborators recommended additional domains to those included in the 1998 SLE COS and research agenda.
CONCLUSION CONCLUSIONS
The domain inclusion and importance results demonstrate that patients and collaborators prioritize different domains, so capturing the perspectives of both groups is essential to ensure a holistic assessment of SLE. The results of the study identify domains that already have a high level of agreement for potential inclusion in the SLE COS, domains that require further explanation, and novel domains that warrant consideration.

Identifiants

DOI: 10.1016/j.semarthrit.2024.152520 PMID: 39106780
pubmed: 39106780
pii: S0049-0172(24)00160-4
doi: 10.1016/j.semarthrit.2024.152520
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

152520

Informations de copyright

Copyright © 2024. Published by Elsevier Inc.

Déclaration de conflit d'intérêts

Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Auteurs

Wils Nielsen (W)

Institute of Medical Science, University of Toronto, Toronto, Canada; Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Canada; University of Toronto Lupus Clinic, Centre for Prognosis Studies in Rheumatic Diseases, Toronto Western Hospital, Toronto, ON, Canada.

Vibeke Strand (V)

Division of Immunology and Rheumatology, Stanford University School of Medicine, Palo Alto, California, USA.

Lee Simon (L)

SDG, LLC, Cambridge, Massachusetts, USA.

Ellie Pinsker (E)

University of Toronto, Surgery, St. Michael's Hospital, 800-55 Queen Street East, Toronto, ON M5C IR6, Canada.

Dennisse Bonilla (D)

Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Canada; University of Toronto Lupus Clinic, Centre for Prognosis Studies in Rheumatic Diseases, Toronto Western Hospital, Toronto, ON, Canada.

Eric Morand (E)

Centre for Inflammatory Disease, Monash University, Melbourne, Australia.

Julian Thumboo (J)

Department of Rheumatology and Immunology, Singapore General Hospital, Singapore.

Martin Aringer (M)

Division of Rheumatology, Department of Medicine III, University Medical Center and Faculty of Medicine TU Dresden, Dresden, Germany.

Marta Mosca (M)

Department of Clinical and Experimental Medicine, University of Pisa, Italy.

Ian Bruce (I)

Centre for Epidemiology, Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK; NIHR Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, Manchester Academic Health Science Centre, UK.

Ioannis Parodis (I)

Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden; Department of Gastroenterology, Dermatology and Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.

Alfred Kim (A)

Division of Rheumatology, Department of Medicine, Washington University School of Medicine, St. Louis, MO, USA.

Maya Desai (M)

Faculty of Design, OCAD University, Toronto, Ontario, Canada.

Yvonne Enman (Y)

Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden; Swedish Rheumatism Association, Stockholm, Sweden.

Beverley Shea (B)

Knowledge Synthesis Group, Clinical Epidemiology Program, Ottawa Hospital Research Institute, Centre for Practice-Changing Research, 501 Smyth Road, Box 201, Ottawa, ON K1H 8L6, Canada; School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada.

Daniel J Wallace (DJ)

Division of Rheumatology, Department of Medicine, Cedars-Sinai, USA; David Geffen School of Medicine at UCLA, Cedars-Sinai Medical Center, Los Angeles, California, USA.

Yashaar Chaichian (Y)

Division of Immunology and Rheumatology, Stanford University School of Medicine, Palo Alto, California, USA.

Sandra Navarra (S)

Section of Rheumatology, Department of Medicine, University of Santo Tomas, Manila, Philippines.

Cynthia Aranow (C)

Center for Autoimmune, Musculoskeletal and Hematopoietic Diseases, Feinstein Institutes for Medical Research, Manhasset, New York, USA.

Meggan Mackay (M)

Section of Rheumatology and Gwen Knapp Center for Lupus and Immunology Research, University of Chicago, Chicago, Illinois, USA.

Kimberly Trotter (K)

Section of Rheumatology and Gwen Knapp Center for Lupus and Immunology Research, University of Chicago, Chicago, Illinois, USA.

Oshrat E Tayer-Shifman (OE)

Rheumatology Unit, Meir Medical Center, Kfar Saba, Israel; Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel.

Alí Duarte-García (A)

Division of Rheumatology, Mayo Clinic, Rochester, MN, USA.

Lai Shan Tam (L)

Department of Medicine & Therapeutics, The Prince of Wales Hospital, The Chinese University of Hong Kong, Hong Kong, China.

Manuel F Ugarte-Gil (MF)

Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas. Universidad Cientifica del Sur, Lima, Perú; Rheumatology Department. Hospital Nacional Guillermo Almenara Irigoyen, Lima, Peru.

Guillermo J Pons-Estel (GJ)

Grupo Oroño - Centro Regional de Enfermedades Autoinmunes y Reumáticas (GO-CREAR), Rosario, Argentina.

John A Reynolds (JA)

Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.

Mandana Nikpour (M)

The University of Sydney School of Public Health, Camperdown, NSW 2006, Australia.

Alberta Hoi (A)

Centre for Inflammatory Diseases, School of Clinical Sciences, Monash University, Melbourne, Australia.

Juanita Romero-Diaz (J)

Instituto Nacional de Ciencias Médicas y Nutrición, México City, Mexico.

Amita Aggarwal (A)

Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow 226014, India.

Chi Chiu Mok (CC)

Department of Medicine, Tuen Mun Hospital, New Territories, Hong Kong, China.

Keishi Fujio (K)

Department of Allergy and Rheumatology, Graduate School of Medicine, The University of Tokyo, Tokyo 113-8655, Japan.

Rosalind Ramsey-Goldman (R)

Division of Rheumatology, Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.

Dafna D Gladman (DD)

Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Canada; University of Toronto Lupus Clinic, Toronto Western Hospital, Toronto, ON, Canada.

Laurent Arnaud (L)

Department of Rheumatology, Hôpitaux Universitaires de Strasbourg, INSERM UMR-S 1109, Centre National de Référence des Maladies Auto-immunes Systémiques Rares (RESO), Strasbourg, France.

Irene E M Bultink (IEM)

Department of Rheumatology, Amsterdam Rheumatology and immunology Center, Amsterdam University Medical Center, Amsterdam, the Netherlands.

Guillermo Ruiz-Irastorza (G)

Autoimmune Diseases Research Unit, Department of Internal Medicine, BioCruces Health Research Institute, Hospital Universitario Cruces, University of the Basque Country, Bizkaia, Spain.

Luís Sousa Inês (LS)

Department of Rheumatology, Centro Hospitalar e Universitario de Coimbra, Coimbra, Portugal; School of Health Sciences, Universidade da Beira Interior, Covilha, Portugal.

Simone Appenzeller (S)

Department of Orthopedics, Rheumatology and Traumatology, School of Medical Science, University of Campinas, Campinas, São Paulo, 13083881, Brazil.

Chrisanna Dobrowolski (C)

Division of Rheumatology, Icahn School of Medicine at Mount Sinai, New York, NY, USA.

Ann Elaine Clarke (AE)

Division of Rheumatology, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.

Diane L Kamen (DL)

Department of Medicine, Medical University of South Carolina, Charleston, South Carolina, USA.

Michelle Barraclough (M)

Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Canada; Centre for Epidemiology, Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK; NIHR Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, Manchester Academic Health Science Centre, UK.

Chiara Tani (C)

Rheumatology Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy.

Jose A Gómez-Puerta (JA)

Rheumatology Department, Hospital Clínic, Barcelona, Spain.

Victoria P Werth (VP)

Philadelphia VA Medical Center and Hospital of the University of Pennsylvania, Philadelphia, USA.

Patti Katz (P)

Professor of Medicine and Health Policy, Division of Rheumatology, Department of Medicine, UCSF, Philip R. Lee Institute for Health Policy Studies, USA.

Behdin Nowrouzi-Kia (B)

Restore Lab, Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON M5G 1V7, Canada.

Sindhu R Johnson (SR)

Toronto Western Hospital, Mount Sinai Hospital, and University of Toronto, Toronto, Ontario, Canada.

Aaron M Drucker (AM)

Division of Dermatology, Department of Medicine, University of Toronto and Women's College Hospital, Toronto, Ontario, Canada.

Zahi Touma (Z)

Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Canada; University of Toronto Lupus Clinic, Centre for Prognosis Studies in Rheumatic Diseases, Toronto Western Hospital, Toronto, ON, Canada. Electronic address: Zahi.Touma@uhn.ca.

Classifications MeSH